Sunday, March 11, 2007

Poem: I am the Disabled Child

I am the Disabled Child

I am the child who cannot talk.You often pity me. I see it in your eyes.You wonder how much I am aware of...I see that as well.I am aware of much...whether you are happy or sad or fearful,patient or impatient, full of love and desire, or if you are just doing your duty to me.I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world around me.I do not give you rewards as defined by the world's standards...great strides in development that you can credit yourself.I do not give you understanding as you know it.What I give you is so much more valuable...I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience,your abilities; the opportunity to explore your spiritmore deeply than you imagined possible.I drive you further than you ever go on your own,working harder, seeking answers to your many questions,creating questions with no answers.I am the child who cannot talk.
I am the child who cannot walk.The world sometimes seems to pass me by.You see the longing in my eyes to get out of this chair,to run and play like other children.There is much you take for granted.I want the toys on the top shelf.I need to go to the bathroom...oh...I've dropped my spoon again!I am dependent on you in these ways.My gift to you is to make you aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.
I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick.What I do know is infinite joy in the simple things.I am not burdened as you are with the strifes and conflicts or a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.
I am the disabled child.
I am your teacher.If you allow me, I will teach you what is really important in life.I will give you and teach you unconditional love.I give you my innocent trust, my dependency upon you.I teach you respect for others and their uniqueness.I teach you about the sanctity of life.I teach you about how very precious life is and aboutnot taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all, I teach you Hope and Faith.

I am the Disabled Child
~Author Unknown~

***I have this poem on my wall in the office....I think it something I need to look at once in a while as a reminder of how blessed I am***

Saturday, March 10, 2007

Explaining the diagnosis...

"My Best Friend Will" by Tara Tuchel, M.S. CCC-SLP and Jamie Lowell (5th grader)
Author is also an Autism Specialist in her district and is doing continuing work in Integrated Play Groups.
A recent discussion came up with a friend about 'when to tell your child about Autism'. This is one tricky subject in my opinion. Having 2 boys on the spectrum I can honestly say it was all in the timing and the approach.
Mr.R (now 17) is diagnosed as having Asperger's Syndrome as well as Anxiety, Tourette's and OCD *some of these are co-morbid...and to me roll into one!* Mr R knew he was 'different' from very early on......probably as early as 1st grade when he couldn't understand why certain tasks were more difficult for him. He also had alot of trouble making/keeping friends. As years passed, we still didn't have a clear dx; so we couldn't in reality explain things to him. It wasn't until almost 6th grade that we finally got the Aspergers diagnosis. Until then....he had alot of 'non-specified' labels which did not give him adequate services both in and out of school.
After receiving the dx...we started with mobile therapists whom with all good intentions began working with him to help him understand his 'quirks'. They started using a workbook of sort...*think it was called 'What Aspergers means to me' or something*. Unfortunately, Mr R's emotional level of understand IS higher than my other son.....he turned ALL the information they gave him into emotional deficeits....aka...HE considered himself defective and faulty. Severe depression set in and eventually he became very angry...even tried harming himself. It was a frightening period for all of us......and I cried alot thinking how this child could possibly get through this. But he did! I can't say he's fully accepted but he's come a long way and finally feels comfortable with himself (now a Junior in High School).
Maturity, caring and understanding and 3 years later........he now advocates for himself and accepts fully who he is! He even made a presentation on Asperger's for his Health Class. He felt the need for ppl to understand him and his 'ways' and tries to debunk a lot of rumors that had started in school. Many kids (teens) came up to him and wished him well....and said they understood him a bit better. really hasn't changed his social life in my opinion. I DO feel that he's feeling more confident in himself and allowing himself to accept others opinions (biggy for him!)
Mr M (now 14) was diagnosed at age 3 with Severe Autism and Mental Retardation . The diagnosis was done at Kennedy Krieger Institute in Maryland. I was devastated at the news.....and just as in Grief took a while for me to get through the stages of grief. But time was essential and we took the diagnosis and applied for all the in-home services, OT, Speech and school services we could get. We had many many hours of *modified to suit HIS needs* ABA and therapists working with him. Today......he is considered Average IQ and High Functioning Autism. Yea...someone who knew him then would NEVER recognize him now.
For years, Mr M would tell me...."Mom....I'm special you know!" My reply, " sure are!" *my heart would melt* He continued, " don't understand....I'm REALLY special!" In his own 'way', Mr M knew he was different. This in itself scared me...and fearful thoughts of Mr R's acknowledgements and depression came flooding back. But learning as I have...Mr M and Mr R are TOTAL opposites *in every way*. I put my trust in that fact and talked to his Counselor about explaining Autism to him.
The book, "My Best Friend Will" was what we started with last summer. I would recommend this book if the child's reading level is lower or if they need visual supports in helping them understand the text. The one thing we did with the book was have him read it then discuss it page by page *for comprehension*. Mr M has a reading level around Gr 4...due to comprehension problems when the text gets too lengthy. This book was perfect for him. The Author and the 'friend' explain through out the book how Will is different but also explain how Will is just like any other friend your child may have. Mr M and his counselor read the book together.....and it was like a light bulb going off on Mr M's face...he knew! He said very calmly but with a big smile, "I have Autism, don't I?" He related to Will with food issues, need for sameness and his friendship issues. Mr M was so anxious to tell me that he JUST KNEW he was special...and now he had a 'name' for why he was so special. Mr M usually understands things better when he has something he can connect the 'ideal' with.
Mr M has used the word Autism at school. They are not really 'happy' about his announcements......but I think its more his 'delivery' than the issue of telling ppl he has Autism. Mr M is completely happy with himself and his diagnosis. He LIKES being 'special' and refuses to let his teachers tell him to 'act normal'. He corrects them by saying, " know I am special" OR "I don't think that brain is special".
Teachers have talked to me about them trying to convince him that he needs to act 'normal' around other children if he wants to be accepted. They upset him more by trying to make HIM fit in...then just accepting themselves 'who HE is'. What a blessing to have a child who IS different....and who feels GREAT about themselves! WHY...would you want otherwise, IMHO?
Explaining the diagnosis on Autism to me is an individual issue. When, how, how much is all dependent on the child. Just as in choice of therapies, methodology and various treatments.....NO CHILD should get a cookie cutter approach.
Know your child, know their capabilities for understanding, know their ability to ask questions.......know yourself and your own confidence to deal with the emotional fallout that may or MAY NOT come from telling them.
This will be an on-going task for us as parents. As they progress and move will the task of being there to support the child in his lifetime achievements. To me...this is not much different that "NORMAL" parents have...just 'special'. :)

Geometry 101....aka Food Issues!

I thought I'd copy/paste my post on this subject from my other blog. I'm finding more and more that Mr M's food issues are not only taste and texture but very visual.

*from other blog* Was entitled: "Beating Invisible Meat"

As I've described before, Mr M's eating issues are probably the one thing we still struggle with advancements in (as far as his Autism). The rest are fairly 'functional'.
A bit of background:
Mr M eats about 3 foods a month...3 different kinds. He rarely strays from this....unless he's ill....then we usually 'switch back' to an old favorite and drop one of the "foods of the month".
I've struggled with Drs, Psychologists even Nutritionists on this topic and how it relates to his Autism. There are many co-morbid issues involved....OCD type behaviors, oral motor issues, sensory defensiveness and of course; Autistic Tendencies. (think Rainman with his fish sticks and eating with toothpicks!)
Anyway....about 2 years ago I got him to start eating bread. Just plain sliced white bread (then we threw in the 'good stuff' made with added Calcium due to low calcium levels). So, twice a week....he took a slice of bread to eat for 'lunch' well as his usual cracker thing (what ever he was eating that month). Then we moved to asking him to eat 2 slices....which ended up very 'close' to normal (the ideal sandwich). Kids asked him, "what kinda sandwich is THAT?" His reply....."Invisible meat!" *gotta love his comebacks*
I figured it was time for some REAL meat and introduced 'Carl Budding' lunchmeat over that summer. Ham only. One for its texture that resembled the Arby's Roast beef (which he DID eat at the time) and the fact that it was fairly consistant in its packaging. *** we've had issues with product packaging too****
So last year (7th grade) he then took a REAL half a sandwich to school twice a week. This took all summer to get him to that level. He bulked, but agreed. It was a rough start....due to my 'stupid' idea of cutting the half sandwich into half again. Remember those little triangle things Mom's did? Well...this was WRONG! That made it '2' sandwiches...not one half! *yea, you wonder why I have math issues????*
Now (8th grade) we are up to a half sandwich EVERY day for lunch. Always Carl Budding ham....always on thin white bread, crusts cut off.....and lunch meat trimmed exactly to fit the triangle bread.
Wonder what this is all about....don't you?
Point is...every day I make this 'artful' sandwich at 5:30 am. Mr R *the older brother* walks by today and says......"Kinda Monkish aren't ya mom?????" *gasp*
My only reply to the sarcasm *must be catching* that Mr R flung at me......
"Least we beat the invisible meat"
which of peels of laughter from this street smart teen.
Artfully yours,